Choice and disability

Recently I stumbled across Clare Laxton’s thought-provoking article, Abortion and disability – whose voices are heard? As a disabled woman, I have struggled with many of the questions that Laxton raises. This struggle has been internal. I have never been able to find a forum, among feminists or elsewhere, where my concerns could be welcomed and critically discussed. I hoped to find such a place at my university’s Women’s Union, but the overall reaction to me was one of uncertain embarrassment, occasionally deepening into hostility. The phrase ‘anti-choice’ was only used once, but I was aware that I had been branded with that label within minutes of opening my mouth on the abortion issue.

I carry more labels than the tins in a supermarket canned goods aisle; most of them applied by people who scarcely know me, so this latest addition to an already inaccurate collection did not bother me too much. What did perturb me was the way in which my serious objections to abortion on the grounds of foetal abnormality were interpreted as an assault on choice, rather than seen for what they really are  an engagement with the ethical questions surrounding such abortions, and a vital challenge levelled against social prejudices about disability.

You can’t enter into meaningful dialogue with a burden, only with a person

Anybody who browsed through my label collection (when I’m not wearing them, the labels are kept in a thick grey dossier on the bottom shelf of my bookcase) would come away with a very confused idea of what my disabilities are and how they affect me. The neurologist writes that my difficulties are “severe”, and adds that I will need “intensive support” throughout my life. The clinical psychologist is more cautious: she describes the impact that my conditions have on my daily life as “significant”. The faceless people at the Department for Work and Pensions, who are meant to give me some money as part of the vaguely named “intensive support”, keep tweaking my adverbs about (severely disabled? Moderately so? Mildly so?) in the hope that one day I will get tired of correcting them and they won’t have to pay me anything. I can’t help noticing that my diagnoses are heavily emphasised when people want to submit me to some nasty medical procedure, but watered down beyond recognition when they are faced with the prospect of having to do something useful  so it’s no wonder that I am slightly suspicious of one clause in the 1967 Abortion Act. Under that clause, abortion is permitted if “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.

Who has the privilege of deciding what constitutes a “serious handicap”? Not disabled people, that’s for sure. It’s no wonder that our voices are excluded from the abortion debate when the right to define disability is accorded only to professionals and the people who have to ‘cope’ with us. In some quarters, the severity of a handicap is determined by the financial and emotional cost of the disabled person’s treatment and care, as the well-known journalist Minette Marrin makes clear in a recent article:

A damaged child very often means the parents are locked into 24-hour care, into poverty, anxiety and, in the absence of extremely generous welfare payments, this is for life… A woman cannot know, when she learns her foetus is damaged, just how great that damage will be and what it will actually mean. Some women are quite prepared to impose such risks and burdens on themselves and on their men, on their existing and future children and on the wider society, and expect to be praised for it. Others, like me, take the view that this is not right, and certainly nothing to feel smug about.

For Marrin, selective abortion on grounds of disability is the only reasonable option. ‘Damaged’ children cause their parents to be imprisoned in a life that no sensible women would ever choose. The irresponsible women who do choose it have imposed ‘burdens’ on society out of a selfish desire to play the heroine. Marrin continues:

It happens that, for personal reasons, I have come to know a lot of people who were born with disabilities, and their families, and I’ve seen again and again what happens not just to the child but to the whole family.

While she is happy to use disabled people as illustrative material to support her argument, she does not once quote a ‘damaged’ person on this issue. I can’t blame her. It’s difficult to engage with people when you don’t see them as your equals. You can’t enter into meaningful dialogue with a burden, only with a person.

Disabled people who do oppose selective abortion are usually dismissed as unqualified to speak about the topic. I lose count of the number of times that I have been told that the ‘seriously handicapped’ clause does not apply to People Like Me. It applies to those poor people who can’t speak or even wipe their own bottoms, let alone appreciate life for what it is. I just don’t understand what it means to be severely disabled; I’m blinded by the relative mildness of my particular handicaps. But fear not, enlightenment is at hand. While I may not understand severe disability, there are plenty of able-bodied people who do, so why don’t I just sit back and leave these difficult questions to the real experts?

Despite these efforts to cut disabled people off from the debate, it remains of direct personal relevance to each one of us. Roughly 90% of foetuses diagnosed with Down’s Syndrome are aborted. How does awareness of that statistic make adults with Down’s Syndrome feel? The message that is being sent to them is that their lives are deemed unworthy of living, that they are inferior beings. Furthermore, the unspoken assumption made by many is that this doesn’t matter, as people with Down’s must be incapable of experiencing complex emotions anyway. It is no use mumbling about ‘difficult personal decisions’ in circumstances like these. That is a travesty of an answer, because the real questions still remain: what is so bad about having Down’s Syndrome? And, more pertinently, what effect does the very existence of selective abortion have on the lives of those with Down’s Syndrome and other disabilities?

I know that a prenatal test for one of my conditions is expected within the next 10 years. It is already within the development stage. This knowledge does not exactly make me feel like a valued member of society. I wonder why? I would like to believe that the test will be used in a positive way, perhaps allowing parents to read extensively about their future child’s condition before the birth, make the necessary adaptations to their home and organise the best educational provision that they can well in advance. Call me a cynic, but somehow I doubt that this is what the test is intended for. And that makes me wonder whether all this talk of equality actually has any meaning, or whether it is simply designed to make non-disabled people feel good about themselves. How can you tell me that you value my contribution in the workplace when you support legislation that is grounded in the idea that disabled people are incapable of contributing anything? How can you laugh and joke around with me over lunch when you support a measure that is designed to protect disabled people from the vale of tears that we are supposedly doomed to inhabit?

The obstacles that I have to overcome are not Mount Everest or my own physical limitations, but the ones that are created by society’s negative and often contradictory attitudes towards disability

One of my favourite books about life with disability is George and Sam, Charlotte Moore’s wonderfully insightful and humorous account of life with her two disabled sons. There is one chapter in this otherwise engaging book that makes me feel disturbed and anxious whenever I read it. “George was not my first child,” writes Moore. She describes how she fell pregnant with a much-anticipated baby, only to discover late in the pregnancy that the foetus was missing its legs and one of its arms. She was unsure what to do. Her then-husband was firmly in favour of termination. Moore eventually came to see things from his perspective. “I thought, if you keep this child, you’re asking it to be a hero, and is that fair?”

Contrary to another stereotype, nobody achieves sainthood through being born disabled. A journalist once interviewed me about my swimming achievements, eager for tear-jerking stories of great endurance. I was half-tempted to give her what she wanted: “Yes, in the morning I wake up and am almost overcome by the thought of the challenges that lie ahead. Yet I know that I must go on. I refuse to let the pain show as I crawl downstairs and manage to grab hold of the cornflake packet. I eat breakfast only by a supreme act of will. My dreams of inspiring humankind and single-handedly bringing about world peace are the things that keep me smiling through the tears as I battle on!”

Charlotte Moore would not have been asking heroism of her child. Life with disability is very ordinary, much to the disappointment of my interviewer (that piece was never published). The obstacles that I have to overcome are not Mount Everest or my own physical limitations, but the ones that are created by society’s negative and often contradictory attitudes towards disability. “I support a woman’s right to choose not to continue with a pregnancy because the foetus may be disabled,” writes Clare Laxton, “but on the other hand I wonder whether our society truly understands disability and might too often make an uninformed decision about continuing with a pregnancy because of a potential impairment.”

Some feminists (apparently Laxton among them) attempt to protect selective abortion from attack by placing it in the realm of personal liberty. “If a woman doesn’t feel able to cope with raising a disabled child, surely that’s her choice?” I wonder what word you latched onto in that question. For many feminists, it appears to be the word ‘choice’. For me as a disabled woman, it’s the word ‘cope’. Unless a woman’s personal circumstances mean that giving birth and raising a child – any child – would be difficult, it is rare to hear pregnancy and parenthood described in terms of coping. Only in the case of foetal abnormality is that word used with any real frequency. It belongs to the same lexicon as ‘burden’, and while it does not justify selective abortion, it can tell us a lot about how disability is perceived in this society.

So can the survey that was conducted in July 2008 by US advocacy group Disaboom, which found that 52% of American adults would rather be dead than disabled. Interestingly, respondents with higher incomes ($75,000 per annum or more) were significantly more likely than people from low-income households to choose death over disability, even though they would presumably have access to better healthcare and resources. This statistic is telling, as whenever I open my mouth on this issue I invariably get a hypothetical question about an impoverished single woman who is pregnant with a foetus that is going to end up with [insert horrifying disease here]. The people who exhibit the most fear and prejudice about disability are not necessarily the people whom we most expect to be afraid – or, more precisely, to legitimise our own fears.

It’s worth noting that our perceptions of what we can ‘cope’ with are often inaccurate in other ways. Two mothers, one of them the author Susan Senator and the other a blogger who is known only as Jen, have written eloquently about their reactions to the ongoing development of a prenatal test for the condition that their children have:

Jen: I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped I my mind around. (Needless to say, I was also completely clueless about autism – I think that my two exposures were Rain Man, and a friend whose wounds I had to fix every night after her child with autism bit her all day). I am so glad that I had my children, and as far as I can tell, they are all very happy to be alive. They contribute to the world in so many ways, and we would all be poorer without them.

Susan Senator: I found myself worrying about how many otherwise ‘lucky’ children would now never see the light of day. And what might I – an abortion-rights supporter for so long – have done had there been such a screening for autism, before I knew Nat?

Jen and Susan make it clear that their perspectives on disability have undergone a radical shift, thanks to the intimate knowledge that they have come by as a result of parenting children who are classed as profoundly disabled. Susan Senator is in a particularly difficult position, as she was actively involved in the promotion of abortion rights before the birth of her son. To the best of my knowledge, she still is, although she now has to ask herself some uncomfortable questions that didn’t exist for her before.

And this is where I disagree strongly with Clare Laxton. She writes that she could never support legislation against selective abortion, giving Baroness Masham’s move to ban such abortions before and after the current 24 week time limit as an example. At the same time, she would like to educate people about the social model of disability. How are the two things compatible?

The social model states that a physical or neurological impairment is not disabling unless society makes it so by failing to accommodate and accept our differences. These failures cannot be addressed until the fear that lies behind them is eradicated. If you see abortion on grounds of disability as understandable, perhaps even advisable, you are reinforcing the notion that disability is an unsavoury thing, something to be afraid of. And this has a very unpleasant effect on the way disabled people are perceived and treated. It will be impossible to combat the prejudices that we encounter so long as selective abortion exists to give those prejudices legitimacy.

Ms Laxton’s article is one of the best (non-disabled) feminist engagements with these issues that I have ever read. Perhaps this is because it’s the only (non-disabled) feminist engagement with these issues that I’ve ever read. My main reasons for feeling alienated from British feminism are prominently displayed on the website of Abortion Rights, which has a special statement on disability and abortion:

Abortion Rights believes that all women, including disabled women, have the right to make their own reproductive choices… The decision of any woman to have an abortion for reasons of impairment is hers alone and should be respected… Abortion Rights accepts the social model of disability advocated by the disability rights movement…

And that’s it. Once I had recovered from the breathtaking magnanimity exhibited in the opening sentence, confusion set in. How does Abortion Rights reconcile its support of the social model with its belief that a decision to abort for reasons of impairment should always be respected? It has made no serious attempt to answer that question.

But at least the silence is respectful, if frustrating. In December 2003, Ann Furedi, communications officer for the British Pregnancy Advisory Service, wrote a response to the outcry that was sparked by one woman’s decision to abort a foetus with cleft palate. Furedi’s main argument was that as this was originally a ‘wanted pregnancy’, the decision to have a termination must have been very difficult for the woman. Leaving aside the strange notion that a difficult decision must automatically be valid, I was struck by her total lack of engagement with the whole concept of disability rights. The headline of this piece was “Trust doctors on abortion, not lawyers”. Furedi’s rosy premise is that doctors must know what they’re talking about it when it comes to disability. They, after all, are the experts.

Funnily enough, a lot of disabled people have a problem with her exhortation to “trust doctors”. Medical professionals cannot and should not govern our lives. Their textbook knowledge of our bodies and brains doesn’t trump our lived experience. Sometimes I feel as though I am being made to fit a textbook definition instead of being treated as a person in my own right, an experience that is as humiliating as it is common. Sometimes I am subjected to the indignity of having doctors turn clairvoyant and start predicting my ‘outcomes’ – a guessing game that begins as soon as a foetal abnormality is identified. And because doctors have the power to decide on the treatment we receive and the services that we can and can’t access, the unwanted ‘outcomes’ will almost certainly become a reality for disabled people unless we wage a continual war against them. The disability rights activist who writes under the name Ms Cripchick sums it up:

i am ANGRY that i have never felt ownership of my body in the last twenty years…i am FRUSTRATED that a life of surgeries, biopsies, physical therapy, and appointments with every specialist have left me feeling like i have lost parts of me for some unknown quest to be normal (that was not even wanted or requested by me).

Later on, she asks: “Where the hell does this leave me?”

Ownership of one’s body is a recurring theme in the feminist movement. It’s a theme that Ann Furedi certainly invokes often enough. But apparently only non-disabled women are to be accorded ownership of their bodies; disabled women (and men) must be left to the mercy of medical opinion. As Furedi points out, two doctors must have agreed that a termination was in the best interests of the woman whose six-month ultrasound scan revealed a foetus with a harelip. But why is the decision of those doctors to be treated as sacrosanct?

In an article for the Pro-Choice Forum, this one entitled “‘Disability Cleansing’ or a Reasonable Choice?”, Furedi turns her attention to a statement issued by the Disability Rights Commission in 2001:

This section [of the 1967 Abortion Act] is offensive to many people; it reinforces negative stereotypes of disability; and there is substantial support for the view that to permit terminations at any point during a pregnancy on the grounds of risk of disability, while time limits apply to other grounds set out in the Abortion Act, is incompatible with valuing disability and non-disability equality.’

Furedi characterises this statement as ‘unfortunate’. She defends her position with: “If we are to allow individuals the right to make informed autonomous choices, we need to accept their right to ‘value disability and non-disability’ differently because, if we are honest, most of us do. We would rather be able to hear than be deaf; we would rather be able to see than be blind.”

In other words, we need to accept people’s right to be prejudiced because, if we are honest, most of us are. For some reason I’m not quite satisfied with this particular message of acceptance.

It may come as a surprise to Ms Furedi to learn that disabled people do not tend to be preoccupied with cures. In the words of Amanda Baggs: “I do not wake up every morning and think, ‘Yep, still disabled’.” I resist the development of a cure for my own conditions with the same vigour with which I resist prenatal testing. I am at home in this body and this brain. When I think about what acceptance means, I imagine a day when this statement no longer provokes disbelief in my listeners. Yes, it’s true. Wonderful as you undoubtedly are, I am not pining away in my corner because it is impossible for me to be just like you.

I used to be surprised by the defensive reactions that I always seemed to provoke when I spoke out on this subject. Not any more. Now I realise that hostility is the automatic response to any assault on able-bodied privilege and all the negative assumptions that go with that. Unfortunately, the response of many people within the feminist movement has been to shut out the voices that challenge then and tune in only to those voices that aren’t quite so threatening. Laxton identifies this when she writes about the presence of the NUS Students with Disabilities Officer, Alex Kemp, at a pro-choice public meeting that was organised by Abortion Rights.

Alex stated that NUS Disabled Students’ Campaign strongly supported a woman’s right to choose and would oppose any attempt to restrict it – even in terms of foetal disability. He made the very good point that in attacking the pro-choice movement the disability movement would not further itself. He was met with rousing support from the 300-strong crowd.

Laxton writes that she was happy to see a disabled person participating in the discussion and was eager to hear his views. Later on, it occurs to her that Kemp may not even have been invited to speak if there hadn’t been an amendment tabled in parliament that specifically mentioned disability. This disconcerted her.

I myself wonder whether Kemp was only invited to speak because the National Union of Students is known for its pro-choice stance. Did Abortion Rights consider inviting a speaker from any other disability advocacy organisation? (How about Not Dead Yet?) Or did they choose Kemp because his views were in sympathy with their own? I don’t see the crowd’s ‘rousing support’ as a sign that Kemp had made ‘a very good point’. I see that support as a sign that Kemp had told the crowd what it wanted to hear.

I was proud to call myself a feminist throughout my time in the Middle East. It was only when I moved to Britain and realised the extent to which the abortion debate dominates British feminist discourse that I began to have my reservations about whether I could find a home within the movement. I was told that I wasn’t ‘qualified’ to condemn abortion on grounds of disability, and when I heard that I realised that I would be treated no less dismissively if I did support selective abortion. Then I would be turned into a token, a mascot. And I have no desire to be either of those things. I want to be a person in my own right.

And this is why I oppose selective abortion, as it is based on able-bodied ideas about what it means to be ‘seriously handicapped’. Well, I have thrown your seriously out of the window, along with your moderately and your mildly, and I’m sitting here as myself. Waiting for you to notice me. It seems that you do not recognise me without my labels. I have not given you the names of my disabilities for a reason  if you can’t label me, you can’t define me and you can’t write me off.

Perhaps that is why I appear to be invisible to you now, as I sit here watching you talk amongst yourselves.

Victoria Al-Sharqi grew interested in feminism as a teenager growing up in Saudi Arabia, and became actively involved in pro-democracy and Saudi women’s rights groups. She came to university in Britain and moved in with a close friend and a cat immediately after graduation. Two of them (the humans) are disabled. She is officially her friend’s carer, to the bewilderment of social services. The cat takes care of her.